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In recent years, growing emphasis has been placed on the need to include the voices of young people with special educational needs and disabilities (SEND) in decisions that affect their lives. For too long, the perspective of other people has been taken as a proxy for the views of these young people. There has been a rise in the number of research articles exploring educational experiences from the perspective of young people with SEND, and inclusion of their voices in the decision-making process and implementation of educational policies. This clearly demonstrates how young people with SEND have the capacity to meaningfully engage in research and co-produce knowledge based on their own experience and expertise.
However, the voices of young people with SEND are under-represented in some areas, including their views on how we capture information about young people’s wellbeing in school settings. This is increasingly important due to the current calls for the government to urgently address the wellbeing crisis affecting young people in the UK today, and to implement a programme of national wellbeing measurement. Indeed, #BeeWell data shows that there are inequalities in wellbeing between young people with and without SEND. Only by listening to young people and what they tell us about their wellbeing, can we begin to understand and make changes to ensure all children in England have the opportunity to thrive.
The inclusion of young people with SEND’s voices is not just a matter of good practice – it is a fundamental right and an essential step towards creating a more inclusive education system.
The need for improved SEND support in schools
A recent qualitative systematic literature review (pending publication) exploring experiences of mainstream secondary education from the perspective of young people with SEND highlighted the important role that SEND support plays in the lives of young people.
The findings of the review showed that young people who were able to access sufficient support were better able to cope with school and experienced a reduction in stress and anxiety levels. Types of support included having access to spaces specifically for young people with SEND, being able to use ear plugs or noise cancelling headphones, having access to audiobooks, computers or laptops, being provided with timeout cards, and teacher flexibility in relation to workload. A lack of or inadequate levels of such support negatively impacted young people’s sense of school belonging and subsequent wellbeing.
The importance of including youth voice
The review also highlighted that perceptions of and desire to access SEND support differed among young people. The visibility that additional support often provided was detrimental in some cases. Young people stated that it was important to them to not be viewed or treated differently from their peers and that accessing support accentuated their differences in a negative way. Thus, to ensure that support is reflective of individual need and aspirations, rather than being based on assumptions or a one-size-fits all approach, it is important that young people are included in the formation of their own support plans.
Creating opportunities to listen to the voices of young people: wellbeing measurement
A 2024 report by Pro Bono Economics has called for the UK government to introduce a national programme of wellbeing measurement to understand why the wellbeing of children and young people in the UK is falling. The report’s ‘roadmap’ for rolling out universal wellbeing measurement concludes with an essential final step: planning for the measurement of wellbeing ‘beyond mainstream schools’.
It is important to ensure that we are considering young people’s view about participating in wellbeing measurement surveys in school.
What have young people with SEND told us?
We have been carrying out a qualitative research project with nineteen young people from four non-mainstream education settings (three special schools and one alternative provision) in Hampshire, Greater Manchester and London, to explore young people with SEND’s thoughts about completing wellbeing measures in school.
Young people were in year 7 to year 11, and had a range of SEND including autism, speech, language and communication needs, social, emotional and mental health (SEMH) needs and learning difficulties.
While findings are still preliminary, some key themes were identified:
This highlights the need for ensuring that young people understand the purpose of wellbeing surveys and feel able to opt out of completing them. It also highlights the need for ensuring confidentiality of survey responses and explaining to young people what will happen with their data.
Improving wellbeing measurement in non-mainstream settings
A recent scoping review (under review), has been conducted to consider how wellbeing measurement is carried out in non-mainstream education settings. It focused on several key areas related to wellbeing measurement:
This focus underscores the complexities and necessary considerations in designing and administering wellbeing measurements beyond mainstream educational settings.
We are also currently conducting a Delphi study to identify some of the key priorities for improving data collection in non-mainstream settings. Stage 1 focus groups have been carried out with staff in special schools and APs/PRUs and researchers, and the first round of the survey will go out in February 2025. This study aims to identify a set of stakeholder-agreed priorities for improvements that can be made to conducting surveys in non-mainstream school settings.
